The Decision to Cancel Therapy

Ever since Thumper had been diagnosed with Tourette Syndrome, we had been seeing this Behavior Health Specialist who was supposed to be teaching us relaxation techniques and something called "brain tic reversal therapy".  The neurologist had told us that we would maybe see the specialist "a couple" of times and that would be it, but now we were going on our 4th visit to the Health Specialist and there didn't seem to be an end in sight.  Really, was it doing any good?

She had taught Thumper some "alternative behaviors" that were supposed to be used instead of his tics, but we couldn't really tell if they were doing any good.  Sometimes he would tic a lot, and sometimes he wouldn't.  At this point in time, he wasn't really having any huge problems, and so we wondered why were we going to these appointments every 2 weeks?  Plus, it was getting really expensive, and was it worth it?

I know I may sound like an awful mom to say that I thought about money over the health benefits of my son, but I needed to justify having to spend over a hundred dollars for every appointment to whether or not it was really that beneficial.  We had a really high deductible, so no, his appointments weren't covered by insurance.  We had to pay out of pocket every visit.  Honestly we were going broke!

At the next appointment, I met with the health specialist and told her my concerns.  I told her we didn't really have hundreds of dollars to be spending on therapy appointments twice a month and that I didn't know this was going to be a continuing thing.  Did he really need these appointments?  She had given us some ideas, so now couldn't we just call if there was a problem or stretch out the appointments?

She didn't seem to get the hint, because she began to suggest that we still meet many times a month but she would try to shorten the appointment time so as to only have to bill me for 45 minutes instead of an hour.  But why?  Why did we need to be going every 2 weeks and what good was it doing?

Plus, you come to this sort of questioning.  Is this what we are supposed to do with a diagnosis of Tourette's?  I mean, is this what people do?  They go to therapists?  Forever?  Thumper seemed to be doing alright.  I mean, yes, he was still ticking on and off, but it didn't seem to be causing him so much pain (or maybe he was getting used to it?---I know, awful to think), so did we need to be doing this?

Anyway, I told the therapist we needed to take a break from appointments until we figured things out and got more money in our flex spending account, and so she agreed and told us to call if things got "out of control".

Yes, I felt guilty, but I think Thumper was doing alright, and maybe this wasn't what Tourette's was all about.  We decided to start doing a bit of research and trying to find out what others do with a diagnosis of TS.  We began looking on the internet, looking for books at the library, and searching for support groups to find any information we could.

Alternative Behaviors for Suppressing Tics?

So, here we were going back to our 3rd appointment with the Behavior Health Specialist that the neurologist had referred us to for this "Tic Reversal Therapy".  While one of Thumper's big tics was swallowing and gulping loudly, this doctor had him trying out an "alternative behavior" to try to stop the tic.  

Every time he was to gulp, he was supposed to put his teeth together and by doing so it would make it too difficult to tic.  So, did this work?

Well, for the first few days he gulped nonstop.  I don't know if it was because he was keeping track in this little notebook and that was exciting for him, but Thumper was gulping, biting, and tallying all week.  It was crazy.  He would come up to me and show me how many hundreds of tally marks he was making in his notebook.  Was I supposed to say "Good job!"?  I didn't know.  

But then, after a while, he wasn't ticking so much.  If it was the alternative behavior that had helped or just that his tics were waxing and waning, I wasn't sure.  

We went back to the specialist to report.  She wanted him to continue with this alternative behavior but then she also wanted him to count how long he could go before the urge to tic would go away.  So now he again would be biting his teeth and tallying in his notebook, but then he had to write numbers of how many seconds it took to relieve the tic.  OK, more focusing on the tics.  Again, I felt like this wasn't right to draw so much attention on them all the time.  Hmmm....

Thumper had two main tics.  He gulped and swallowed, but then his other big tic was a physical tic of scrunching up his face and nose and making a little ooh face and winking his eye.  All of the facial tics seemed to stem from the nose scrunch and then build off of it from there.  

This specialist had addressed the gulping and swallowing with a teeth biting alternative behavior, and now she wanted to address the facial tics. She gave him a new alternative behavior to stop the nose scrunching.  She wanted him to press his lips together every time he did the nose scrunch tic.  This was to stop him from being able to scrunch up his face.  Did it really?  I didn't see how pressing your lips together stopped any nose scrunching, but Thumper seemed to think it did, so we added this to the alternative behavior list and we were sent on our way.  Thumper was to record both tics and alternative behaviors and how often he was ticking and how long it would take him to stop after doing the alternative behaviors.  

This all seemed like a lot to me, as for the next few weeks he carried around this little notebook tallying and counting as he ticked, bit, pressed lips, and recorded.  Again, why were we trying to make him so aware of his tics?  While the doctors didn't think he had any big OCD issues that often coincide with Tourette's, it seemed as if now he might be getting a little obsessive with all this tic recording he was doing!  

Was all this really worth it?  I thought we were just supposed to be going to one or two appointments and learning some "relaxation techniques" as what the neurologist had told us.  It seemed like we were in this never ending follow ups with keeping track of tics.  I don't know if it was helping or not, but we kept our appointment and went back once more.

Tic Reversal Training for Tourette Syndrome?

The neurologist who diagnosed our son with Tourette Syndrome asked us to see a Behavior Health Specialist to see about something called "Tic Reversal Therapy".  This tic reversal therapy or training was some sort of way to teach the brain to not tic or do something else instead.  

We really weren't sure about all of this, but we didn't know what we were supposed to be doing if anything after your son is diagnosed with Tourette's, so we just went along and did as we were told.

The Behavior Health Specialist was a nice lady, and she seemed pretty smart, and so we sat back and let her tell us what we should do.  She had asked us to monitor Thumper for a few weeks and keep track of how often he was showing tics and which ones.  This we tried, but seriously, unless I had all the time in the world in which I could just sit there and stare at Thumper, there was no way I could keep very good record.  It was impossible most of the time, and so our little log turned into more of a guessing, make up the answers sort of journal.  

It was hard to say when Thumper ticked more.  I couldn't say he did it more in the morning or at night, or after school.  I think I didn't have a lot of time while getting 4 kids up and going in the morning to pay enough attention.  I suppose I noticed it more at night, but that was only because the day was winding down.  Who knew?  I wasn't much help.  

So anyway, we turned in our "best guessed" journal of Thumper's tics and waited to see what was next.  

This is where things surprised me.  She wanted us to come up with a sort of "cue word" in which every time we saw Thumper tic, we were supposed to say the word so that he would be aware of his tics more.  OK, this seemed a little odd.  I thought we were supposed to ignore the tics and now we were going to be focusing on them?

We trusted the doctor and did this for a few weeks as well as keep another log of how his tics were (another awful hit and miss record!) doing.  At our next appointment we turned it in and awaited our next instruction.  This is where the tic reversal training began.  

The doctor gave Thumper a new behavior.  She called this an "alternative behavior".  Instead of gulping, she wanted every time he had to do the swallowing or gulping tic, that instead he should put his teeth together and this would make it so he was unable to swallow.  So, for the next few weeks he was to do this, but at the same time he was to keep track of how often he was doing the tics and that he should tally them in a little notebook.  

So, here we went for the next few days with him ticking more and biting his teeth together and then writing little tally marks in his notebook.  Was this going to help him lesson the tics?  It seemed a little strange, and I continued to wonder why he needed to be made so aware of his tics.  Wouldn't that make them worse?  It did at first, but then it seemed to not be so bad.  Again we tried to document his progress and we waited for the next appointment.  

Tourette Syndrome and ADHD

It kind of made sense.  

Here we were seeing this "Behavior Health Specialist" to help us with our son who had recently been diagnosed with Tourette's, but she was asking us about hyperactivity and possible ADHD.

I mean, Thumper had always been super hyperactive, although I don't think I'd ever go to label him as ADD or ADHD.  Funny to say though, as we sat in this doctor's office for an hour, Thumper could not sit still for the life of him.  He was up and down, climbing on chairs, opening blinds, fiddling with whatever he could get his hands on.  No wonder she was thinking ADHD.

Well, she had given us some questionaires to fill out and one to give to his teacher.  These were full of questions in which you were to rate Thumper and his actions by circling "never", "rarely", "sometimes", "often", or "always".  At home, my husband and I were just laughing as almost every question registered as an "often".  We were thinking, "Gee, maybe this kid does have ADHD."  

From what we have slowly been learning, it seems as if Tourette Syndrome often comes with some other little friends, such as ADD, ADHD, or OCD.  So, sometimes doctors like to rule out ADHD before dealing with Tourette's itself.  

Anyway, we finished our questions and went back to our next appointment to see what the doctor would say.  Actually, among all this Tourette new stuff, we were actually thinking how nice it would be to be able to help Thumper calm down a little bit more.  Seriously, he was soooo hyper.  He had so much potential, but he just couldn't seem to focus.  We had to continuously tell him to do his jobs or practice his piano or do his homework.  He was always getting distracted and messing around.  He always had to be running or spinning or standing on his head upside down on the couch.  It drove us crazy at times.  

Well, we were surprised when we went back to the doctor and she compared our answers with those of Thumper's teacher.  While our marks were many for the "often" or "sometimes" category, his teacher had marked every single question as "never" minus one that she had said "rarely".

It just didn't make sense.  There were even a few questions on there that she had marked "never" in which she herself had brought to our attention earlier in the year.  We just didn't understand.  It was almost as if she wanted to make sure that there was no way we could say he had any form of ADHD.  Or maybe it was as if somebody somewhere was making sure the school was in no way diagnosing Thumper as ADHD.  

It kind of made us mad.  Why would she do that?  Obviously it was so opposite that the specialist couldn't do anything.  

So, oh well for that.  Although it seemed to make sense to us that maybe these tics were a result of having so much energy and hyperactivity that they just had to come out, we would never really know for sure.  At least not now.  Maybe we were hoping to kill 2 birds with 1 stone if that makes any sense.  Maybe we were still stuck on the confusion of where this Tourette's came from anyway.  

So, with ADHD not able to be diagnosed, the specialist went right into focusing on Thumper's tics.

A Behavior Health Specialist for Tourette Syndrome?

After being diagnosed with Tourette Syndrome, the neurologist referred us to what he called a "Behavioral Health Specialist".  He said this would be someone who could help teach Thumper some relaxation techniques to maybe lesson his tics and then talk to us about something called "tic reversal training".  He said we probably would only have to go a few times and then we'd have the tools we needed to help Thumper.

When we first met with the specialist, she was very nice and she first met with me alone and then met with Thumper alone, and then brought us in together.  Again, here I was worried that maybe she wouldn't believe he actually had Tourette's, and maybe she would tell us what awful parents we were, but that wasn't the case.  She believed he had Tourette's, but she also saw a lot of signs of ADHD.  Thumper is a pretty hyper child, and while he has never had behavioral issues normally stereotyped with ADHD, he was always running around, he could hardly sit still, and he had an awful time staying focused or not getting distracted.  While we were there in her office, Thumper was climbing up and down the window sill, rolling around on the floor, standing up, sitting down, and touching everything.  I guess I could see why she thought ADHD might be a factor.  

Before she addressed the Tourette's, she wanted to rule out ADHD and OCD.  I learned that often Tourette Syndrome coincides with ADHD and OCD, so it was important to see if there were other issues affecting Thumper.  She gave us some evaluations to fill out and some to give to Thumper's teacher, while she asked a lot of questions and took a lot of notes.  

While she was going to wait for all the evaluations to come back before she decided on ADHD, she began trying to see if OCD was a problem for Thumper.  I didn't think Thumper had OCD issues.  While yes, he did often take a long time to clean his room or put his organize things because he had to line up his books perfectly or arrange something a certain way, I didn't think it was an OCD issue.  I mean, he wasn't one of those kids that are a germ-phobe and have to wash their hands all day long.  From what I've heard about OCD, it seems like a lot of majorly obsessive traits.  Thumper had to have some routine in his day, but not enough that I thought it would be obsessive compulsive.  

The specialist weighed over his answers and our observations, and somewhat let us know that he did not have OCD although he might have a few OCD traits, although she would get into that later.  For now, she wanted to start on a sort of "plan" for lessening his tics.  

OK, so here she would tell us some sort of relaxation exercises? 

Well, no.

She told us that we needed to start a log to see when Thumper was ticking the most.  She said she wanted us to watch him over a 2 week period and record how often he was ticking in the morning, in the afternoon, and the evening.  She wanted us to have a separate chart for the vocal tics and facial tics.  We were to keep track and report back in a couple of weeks.  Then when she could see a pattern or whatever, she would begin the "plan".  

So, OK, fair enough.  We went home and for the next little while we began keeping track of when Thumper's tics were bad or not.  Of course, this wasn't as easy said than done.  I mean, unless I was sitting there staring at Thumper all day long, I really didn't get a good report.  Sure when his tics were bad I could hear him, but for his facial tics I had to be staring at him all the time, and we live pretty busy lives, so it wasn't working out to well.  We have 4 children, and we both work.  We have dance classes, scouts, music lessons, and activities.  We felt bad, but we didn't know how accurate this record was going to be when we didn't have the time to be watching Thumper 24 hours a day.  So, sorry to say, but I kind of guessed a lot on the log, although I tried, but we did it, and after filling out the other paperwork for ADHD and other things, we were ready to meet back with the specialist.  

Tourette Syndrome; How Do You Know This is Real?

Our son is quite a character.  He's always been the "ham" or the center of attention.  If there has ever been a chance to be in the spotlight, he is right there, jumping and waving in front of the cameras and doing whatever to get the attention on him.  

So, there does come some times as a parent that you might wonder, "Is this really Tourette's?"  I mean, how do you know it's for real?  How do I know that these are really tics and not just something he's found he can do to get extra attention?  Or maybe these tics are real, but can he control them more than I think?  Can he decide if there are going to be a lot of tics or a little?  Does he do them on purpose sometimes?  How do you know if tics come from some uncontrollable thing, or what if they are just because he did them a few too many times and developed a bad habit?  

Maybe we are crazy parents, but these thoughts have crossed our minds on occasion.  Of course in our son's case, he seemed to not even know he was scrunching up his face all the time until we showed him in the mirror. Maybe that was a bad thing to do?  And as for the gulping and swallowing, I'm sure he could hear himself doing it so he was aware, but did he really have to do that all the time?  

Tourette Syndrome, as well as many other neurological conditions, doesn't really have a real medical test that can be done to diagnose it.  To be diagnosed with Tourette's, a medical professional, primarily a neurologist, must make the diagnosis by ruling out other possible neurological conditions and seeing that the child's symptoms meet certain criteria.  

So, how did the neurologist know Thumper had Tourette Syndrome?  According to Medscape, 

 Diagnostic criteria from DSM-IV-TR for Tourette syndrome (307.23) are as follows:

• Both multiple motor and one or more vocal tics must be present at some time during the illness, although not necessarily concurrently
• The tics occur many times a day (usually in bouts) nearly every day or intermittently over more than 1 year, during which time there must not have been a tic-free period of more than 3 consecutive months
• The age at onset is younger than 18 years
• The disturbance is not due to the direct physiological effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis)
  
  
  
  
  So, Thumper fit into all these criteria.  He was under 18, he had both motor and vocal tics.  The tics had been going on for over a year.  He had never had a tic free period of more than 3 months.  (I don't think he had a tic free period of more than a day!)  And, the neurologist had ruled out any other underlying medical conditions.
  
  
  So, that was it?  
  
  
  Maybe we were still hoping he didn't have Tourette's, or maybe we still felt like we were crazy because no one else (besides the medical professionals) seemed to believe he had it.  I think maybe I was imagining that one day it would turn out to all be a lie and people would be pointing their fingers at us and shouting that the whole thing was a scam.  But for what purpose?  
  
  
  Sure, our little boy was big on attention.  He was always getting into everything as a young child and he was always getting into trouble, but I don't think he would come up with these tics as a way to gain attention.  Really, he had been ticking for many months before we even brought it to his attention because from all we have read, we thought we were supposed to ignore the tics and NOT bring attention to them.  Plus, all the "bad days" where he is gulping uncontrollably, why would he do that?  Why would he cause himself so much pain?  Or when he's at school or playing or just reading quietly with no one around, what reason would he have to be scrunching up his face and gulping over and over again with no audience to see him?  
  
  
  It just didn't make sense that it could be an act.  Although we did have certain adults comment that he was just "doing it on purpose".  
  
  
  Tourette Syndrome has been so made fun of over the years on movies, in television shows, and just as part of everyday joking, that it's hard when it's something in real life.  I don't think people can accept it.  They are thinking it's supposed to be the shouting, swearing, or super violent uncontrollable flailing of arms or something.  While there are many cases of Tourette's that involve these things, it is not always the case.  
  
  
  Still we didn't know, and we always had these little twinges of doubt in the back of our minds, so we wanted to learn more.  Maybe in a way we wanted to be able to prove this was real not just to us, but to all those around us who continued to non-believe.  

The "Non-Support System"; When Others Don't Believe It's Tourette's

So, your child is just diagnosed with Tourette Syndrome, and what do you do?  Well, in our case, we went right out feeling the need to talk to close friends, family, school administration and teachers about Thumper's new diagnosis.  We thought that was the thing to do.  Boy, we were sure wrong!

First we went straight to the school psychologist and emailed his school teacher.  We felt it was only right to alert those trusted adults who were most closely working with him on a daily basis.  While the school psychologist seemed very open and offered to help in any way possible, Thumper's teacher seemed to be on this "Thumper is completely perfect" kick.  It was really weird.  She was a great teacher and loved him, but it was as if she refused to believe there could be anything was wrong with him and she almost made it seem like we were being awful parents to even suggest it.  I didn't expect anything from her really, but at least I thought she would accept the professional diagnosis and be willing to help or accommodate if needed.  She did say she would do anything for our son and how much she loved him, but she kept reiterating how much everyone just loved him and that he was so perfect that there could never be anything wrong with him.  It was just a little odd.    Maybe it was all in my head, but it was just like she could talk around the subject of my emails, and instead of answering my questions, she'd more over state how wonderful Thumper was and that all was well.  While I was glad that "all was well", that wasn't what I was looking for.  Maybe that wasn't our place to expect more than that from a teacher.  From further emails or correspondence with this teacher, I always felt like she thought we were awful parents trying to point out the little "faults" in Thumper, when honestly we weren't.  We were just trying to figure out why he was doing these things and then more trying to help him when he was complaining of them hurting him.  

We felt like we needed to inform the principal, and so I did, but she seemed a bit confused as to why we were telling her.  I think she asked something like, "Is there anything that I need to know that is going to affect him differently in the classroom?"  or something like that, and I felt kind of lost as what to say.  I don't know.  She seemed to be in a hurry to get somewhere and I guess my news wasn't really a big deal.  I just thought gee, maybe I was supposed to tell her as the school principal, but then again, I guess I was wrong.  Maybe I was making too much a deal of this than I needed to.  

We informed another teacher who worked with him after school of the diagnosis.  She seemed shocked and didn't believe it.  She said if he had Tourette's then she could think of plenty of others that had it, heck, maybe she had it too. I tried to explain his gulping and swallowing.  I thought that she would understand now because the last time he was with her he was gulping so badly that I think she was afraid he was sick and was about to throw up or something.  I don't think she remembered this though.

During his lesson, Thumper was badly ticking doing his scrunchy nose and ooh face and his teacher commented saying how he was making that face again like he was frustrated or didn't want to do what she said, but I told her, "No, that is the tic!  That's what I'm talking about!"  But I still don't think she understood. 

OK, so enough with telling teachers.  I guess maybe they didn't need to know.  Or at least they didn't understand.  I just didn't want Thumper to get in trouble if he was making these faces at them or gulping all the time.  I didn't want them to think he was being rude or disrespectful.  

So, I turned to family.  And why?  Well, this was our family!  We felt like it was obligation to report any news like this to family.  Isn't it?  It's important so they are informed, but at the same time, hopefully we could have some sort of support or comfort as we were still feeling sad and upset of this news and didn't know how we were going to handle it.  We wanted to reach out for help, but that isn't what we got at first.  

First off, let me say that this is not the reaction we got from ALL family members and friends, but it was we got from many:

Several family members and friends didn't believe it.  Some didn't understand "why we were always trying to find things wrong with our kids" as they said it.  Others were horrified that we were telling anyone at all because they didn't think it was business you should share with others.  Some thought it wasn't real.  Some thought it was no big deal and what were we so upset about.  Some thought it couldn't be so because if he had it, then they had it too because sometimes they bounced their leg or coughed a lot and couldn't help it.  Some thought we were crazy because they had never noticed anything so why were we making things up?  Some thought they could be helpful by making it seem like no big deal and "mimicking" Thumper's tics at times to show that it was nothing abnormal, but we felt that was just drawing more attention to it and we wanted to draw less attention by it.  

So, what did this do for us?  Well, first off it made us feel horrible.  We felt like here we were trying to accept this diagnosis and not feel like it was the end of the world, and while it really wasn't the end of the world, it would have been nice for someone to at least have empathy with us for a small minute.  Or it would be nice to think they didn't think we were crazy or awful parents to have looked for a diagnosis.  We were glad for the "It's no big deal and he will be fine," but it came without the acceptance of Tourette's.  It's like we just needed for everyone to first say, "Oh, that's too bad he has to have it, and we love you and is there anything we can do to help, or what do you need?"  And then they could give us the pep talk of "everything will be OK".  But instead we got more of the "that can't be right, I'm sure he can't have that," or they went straight for the pep talk more in a manner of telling us nothing was wrong and so why were we worrying at all. 

I suppose you just don't know how you are supposed to feel when your child is diagnosed with Tourette's.  I suppose maybe there really isn't anything anyone can say that will make you feel better.  No, we're not trying to find things wrong with our kids, and no, it isn't the end of the world, but we wish we had more of a support system.  Maybe it's because Tourette's is so misunderstood or many people don't know all the details about it.  We really didn't know a lot either.  So as we weren't getting any help from others, we decided to begin researching on our own, so that we could better understand this condition and maybe figure out some things to help make life better.